|
I also have searched and searched for three years now for someone with a similar situation. I am so glad to have found you as well although I'm so sorry your daughter is going through this.
My son also has hip pain. He has also had an incident of a bad mouth sore but that was one time. Through all of my reasearch and many travels to doctors, I also only come up with MDS. The doctors that we have spoken with (NIH, Nationwide Childrens, and Akron Childrens) have also said they think it's a MDS that hasn't came fully to surface yet.
He stared out with a couple very large lymph nodes in his inguinal area that resolved on their own. That is when blood work was ordered and his low blood counts were discovered. Months of repeat labs with no change prompted his hematologist to do a bone marrow biopsy and that is when the hypocellular bone marrow was discovered.
His WBC was, at first, of concern because it was pretty low. He also had low NK function (from my understanding that is a cancer fighting wbc). His RBC has always been low but I really do think recall them mentioning his iron being low at first. When it was discovered they started him on oral iron which didn't work so he has to have iron infusions every few months. Now his WBC is low but mildly low. Like you my biggest concern is his hypocellular marrow. It is currently at 30%.
To look at him you would never know anything was wrong. He is also healthy and very active and growing normally.
We are traveling to Boston Dana Farber Childrens Hospital next week to see a Doctor that specializes in bone marrow failure. I will let you know what the outcome of that appointment is.
Our children's stories are very simular and I hope we are able to help each other in so.excited way.
Prayers to you and your daughter.
|